Lost Generation s**t end of stick

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Hello
just like to quickly say how being one of the "lost generation of people with ASD" really sucks,
haven been diagnosed with ASD at the age of 44, and haven spent my entire life going through hell
on a small island of materialistic bigots (Jersey Channel island) that refuses to give any real support
with people with ASD let alone someone with late diagnosis of ASD.

I don't think any one who is neuro typical really understands the implications of being diagnoses late in life.
Sure, now that ASD has had a lot of coverage people are becoming aware and perhaps some people have finally got
some support.

However, I am afraid that the people from the lost generation perhaps have had their lives damaged too much,
that they are now financially and perhaps even psychologically too damaged to now help.
So people in power of funding perhaps don't even bother, I mean, in all fairness who would help some
maddened damaged crazies over nice sweet but misunderstood cute kiddies.

Not that I think that the kids don't deserve the help. As for sure, the kids definitely do!
But so do the rest of us, and perhaps if you put down onto paper how much help each individual gets
people may realise that over the entire lifespan of a human being with ASD, the late diagnosis ASD sufferers
really get the s**t end of the stick and thus get no or little support, and the result of such end up having to
endure a particularly difficult end of life, while all the funding is given to everyone else.

Bit like saying, hey don't spend any money on those ones, there already broken.
But we have a fresh start with the new ones, who we may be able to save.

I am not sure if this is fair. and I am definitely feeling extremely frustrated, in a position that most avenues of employment are unsuitable in the area that I live, but in the areas that I have high level qualifications in and extensive experience, which I could make a living from, I am starved of funding in all forms.

I also feel that the lack of support for relationships and especially romantic relationships ostracises us even further and results in social isolation as the only other choice other than premature death.

This sucks. personally I think that it is time that the governments of the civilised world woke up and help those who
are find themselves in such a difficult predicament, perhaps even give us compensation. In the same way that someone who had lost their livelihood would be given support if they were not able to work for several years or decades.

Thanks

Your feelings are valid.

I know that feel, diagnosed recently and now 38.

Ah, but I always coped with it so well before diagnosis (at 44, too).

Well, you know, the chronic anxiety was a bit of a downer sometimes, but I soon forgot all about that once I became an alcoholic. The dozen or so severe depressive episodes were a bit rough, as well, I suppose, but they do make the incredibly boring bits in between seem that little bit more exciting. And there were so many fun times; how we've all laughed at the stupid ways I've messed up friendships; the inept fumbling that scared potential partners away would make a great comedy YouTube channel! And so blessed with my career, too; not many people can have done such a variety of different jobs as me; I can even manage 30hrs a week for more than a year sometimes before I turn into a complete vegetable! And it's so post-modern and "Zen" to live outside society with so few possessions, isn't it?

Nah, I didn't need help before, why would I need any now?!

Just the little bit of help that they promised me at my diagnosis would be nice (two part-time autism staff covering a whole district dealing with a two year waiting list for assessments). Still I'd waited for 44 years to be diagnosed, what's another four years, eh?

I waited 67 years to be officially diagnosed, and almost as long before I realised my AS status. For the first time in my life I am receiving help now, lovely ladies from a health care agency come and help with housework once a fortnight, though this has nothing to do with my AS status, but my physical disabilities and challenges.

I have no regrets overall that things unfolded as they did. Not knowing probably made me push myself much harder through the worst of times, and like you T, flirtations with substances in past decades were not good for me though they did relieve the soul pain for a while. Glad I am free of that need now and have been since my diagnosis (that's a coincidence though, it happened before then).

A lot of my health issues over a lifetime made more sense once I knew about the AS and it helped me understand challenges some of my grandchildren are now grappling with health wise.

Whether I had known or not, I still would have been a bully magnet when I was younger, knowing wouldn't have changed that set of horrors - and if others had known, I possibly would have been bullied more. You never know the road not travelled and can't assume automatically that it would have turned out better...

I'm glad I was too early for a lot of the "help" now available. It seems to be about 99% cramming square pegs into round holes, and 1% about helping us find square holes - places where we are naturally better than average. I don't want to learn to be independent - I want a steady partner to help with business communication.

Training AS people in focused techniques of self advocacy from an early age would lessen the negative impacts of early diagnosis and the massive baggage that comes with early diagnosis and related stigmatisation. It surprises me that outfits like the National Autism Society in the UK and other similar "advocacy" outfits do nothing much to directly empower AS people.

I had a catastrophic accident two decades ago that enabled me to therapy in my 30s. At least for me, the experience was quite helpful in fixing many of the issues I had as a result of autism, including my monotone voice. As well as an immersive socialization experience, both mental and physical, as I had to depend on others for several weeks.

At least in my case, therapy at later aged proved to be quite effective. Or, it could just mean that I'm at polymath that learns continuously through their lifetime. I've learned to sew in the last month.

BTDT,

That sounds like the right kind of help, the kind that incorporates practical skills and stresses lifelong learning. I am doing many new things I never used to do, without the aid of psychological intervention. The only kind of "help" I got from the professionals was very negative. I saw my horizons contracting, not expanding, over the years. Today it's much different.

I'm glad that the "help" that kids on the spectrum get forced upon these days wasn't available in my town when I was a kid. I think that I would have hated ABA therapy. I did see some of my horizons shrink because of my dad's outdated ideas of what autistic people are capable of. There was a period of time when I gave up on my future and chose the life of a hippie that I could have without being expelled form High School. My dad chose that ASE Job Preparation programme at Kwantlen College instead of letting me choose my own courses and career path. One of my work experiences turned into a job so I took the job because I didn't want the "help" that my parents wanted to give me looking for a job, because I was afraid that some of that help would include feminine clothes and hairdos. I wanted to express myself as male in a 60s way.

I ended up working at two very good jobs in the 2000s and the 2010s.

...Me too .

_________________
Renal kidney failure, congestive heart failure, COPD. Can't really get up from a floor position unhelped anymore:-(.
One of the walking wounded ~ SMASHED DOWN by life and age, now prevented from even expressing myself! SOB.
" Oh, no! First you have to PROVE you deserve to go away to college! " ~ My mother, 1978 (the heyday of Andy Gibb and Player). I would still like to go.
My life destroyed by Thorazine and Mellaril - and rape - and the Psychiatric/Industrial Complex. SOB:-(! !! !! !! !! !! !! !! !! !!

Isn't every generation lost except the most recent?

Yes I think I am in the same camp as those who are glad they didn't get the help at a young age.

I can't stand being told what to do and I think my life would have been oppressive.

Having said that, I wish there was far more information out there for adults so they knew where to go for help when they need it. GP's could be better informed locally as could social workers.

The services offered keep changing here and just when something worthwhile has been established they are disbanded because another agency/charity or organisation win the bid for the next year or two.

Local authorities are really making a mess of services, not just because of funding but they cannot or do not sustain a service when it is working well for people.